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Hello. This is me, I’m learning to walk again

Today is Tuesday 11th April 2017, I’m a 51 year old man and I have to learn to walk again.

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Today is Tuesday 11th April 2017, I’m a 51 year old man and I have to learn to walk again. 

Last Thursday I was fine. I was a bloke with a sore back that I’d had for years and was on my way to work in the car. I’d stopped at Coop for lunch to save time later and when I walked back out to the car, my legs gave way. 

An odd feeling for someone who has always been fit and walks well over 30 miles per week. 

I guess I sensed it was something more than a coincidence as, back in the car, I turned for home and made another appointment with the doctor the same day. I’d seen them the day before but the pain had become progressively worse – beyond even what I could cope with. 

The second visit was even less successful than the first. I literally crawled up the stairs to the surgery, waddled into the doctor on extremely wobbly legs to be told I needed to get over it and the pain relief they had offered the day before that wasn’t touching the sides, was appropriate for the problem. So I waddled back out to the car to brave it out. 

No mention of spinal compression, tumours or even a broken vertebrae floating around chopping off bits of the nerve bundle coming off the spinal cord. 

The next day and quite a few pointless painkillers later I called 111. Still not prepared to describe it as a full on medical 999 emergency – surely the doctors who’d looked after me for nearly half my life couldn’t be that wrong could they? 

As background. I’m not a complainer. We don’t waste medical time and I’ve had a back problem since I was 13 or 14. All of my family have worked in the national health so we have been brought up to respect the system. I for one have never believed I had any right at all to kill a queue or try and beat the system. 

But the very sharp eyed paramedic, who was ex-army and a current rugby coach saw something else and speaking again to the doctor got me taken in an ambulance to the emergency unit. We did have one brief try to get into the back of his car but by this point my legs were no longer working at all and the chances of me standing up had evaporated completely. 

Lots and lots of prodding, pushing and testing and it was apparent that it wasn’t getting better and the pain which was bad was disproportionate to the impact it was having in my mobility. So the evening of Friday saw the first attempted MRI scan. That was a total disaster. I’ve had a few of them over the years and all have been painful. But even with morphine and other drugs, this time it was unbearable within moments so was abandoned with just an initial quick pass. 

The consultant knew they needed more and this time under a midnight general anasthetic I was (apparently) wheeled back in for another more successful scan.  

And this was when the NHS hit a new low and a new high within a few minutes. 

The low was at around 7am Sunday. Having got back to a little side room off a ward at around 3am and still foggy from lack of sleep and anaesthetic  I was woken up to be told by an unnamed doctor, who was obviously very junior and a bit out of his depth that I had a spinal tumour and needed emergency surgery. 

Tough to hear anytime. But on your own and drowsy it was a real soul breaker. I’d love to say I don’t cry easily but since I lost my Dad I do. I cry easily and quite a lot. So I sat on my own and cried. 

And then the magical Emelia arrived. Within minutes she has me more positive, smiling and 20 minutes later, when Holly my wife arrived, I was laughing. She quietly catheterised me, took me down for my next MRI and then unbeknown to me stayed with me throughout until I came out of the operation some eight or nine hours later. 

Now that restores your faith in the nursing staff that work in Britain’s incredible NHS. 

So that’s the first bit over and done with. The operation is complete. Now we need to understand what they found and plan a way for me to learn to walk again at 51 years old. 

It seemed pretty easy as a toddler so how hard can it be to relearn it? Let’s find out over the next few weeks and months. 

If you’d like to walk with me by my side you’ll be very welcome. I’m sure I’ll need all the help I can get. 

And as for my amazing family and friends. I’ve never ever felt more loved and appreciated in my whole life. Thank you from the bottom of my heart. 

Unbelievable

I don’t need to say anything more than I’m here, I’ve skied and I’m okay.

I don’t think I believed this could have even been a possibility only ten and a half months ago.

Eight months on and today was a very good day

April seems like a million years ago. In reality, it is only eight months, but the world feels like a very different place for me, considering where I was then.

So, big news first.

I’ve been discharged from the care of QMC. I’m now officially as recovered as I’m going to get.

Which is good.

Apart from the pins and needles which are still evil, almost constant and right across the underside of my bum, the soles of my feet and in a place you’d rather not have them if you’re a bloke. So, I have to live with that and I guess I’m getting used to it and hoping my new course of physio may reduce it in the longer, long-term.

But the good news is that I saw the before and after MRI scan and it is amazing.

In the before images, you can see a thick white cord for two-thirds of my spine with a long black section in the middle and a dribble of white at the bottom again.

After the op, it’s almost a perfect white tube, of consistent width for the full length of the spine, apart from an obvious kink in the middle, which is the bit that was damaged and the bit that has left me with the pins and needles.

I can live with that, considering what could have been.

So as I had the Spine Man in front of me, I asked the few questions that have been burning away for a good few months.

Can I ski in March?

“Yes, no problem as long as you get fit enough. You’re at no more risk now than you were before.” (And I did ski five weeks before it all happened, so that feels like a massively reduced risk in my head)

Can I hit the running machine again?

“Yes, fill your boots”*

Why have I still got lower back pain?

“What we did is repair the bit that was broken, we didn’t touch the lower back and any pain you have there is just you getting older. Keeping fit and physio will minimise this, but nothing has changed here and it’s as good/bad as it was before.”

The end of the beginning

So that’s it, one journey is over and the journey to ski in Andorra begins. I’m going to hammer that running machine and I’m going to be a tall skinny bastard and ski better than I have for years. (once I get over the scared bit I always get on the first morning)

I’ll upload the videos once I’ve done it.

So are you still Steroid fat?

I’m pleased to report that for the first time since the op, I’m back to 100kg (around 16 stone) which is very good for a man of 8’6″ and have been averaging 10,000 steps a day for pretty much the whole of the last seven months or so.

So thank you

All of my lovely friends and particularly my family who have been exceptional, put up with my whining and supported me through all of this – even though I’ve been under their feet for most of the last eight months whilst I’ve only been working part-time.

To my exceptional clients David and Zoe at Garmendale who came to see me in hospital and said they would continue to pay me, even though I was off work, despite the fact that I’m just a contractor with no rights whatsoever. You wouldn’t believe what a lift this gives you when you’re up against it.

And to my new friend Angie Woods, who gave me a renewed purpose and is only 18 days into the same journey. She’s doing brilliantly thanks to QMC too and you can read her story here.

Thank you from the absolute bottom of my heart.

Have a bloody brilliant Christmas. We will.

The Lyles

 

*He was Italian and called Giovani so I’m paraphrasing a little here.

The last post – I’m better

So that’s it.

I’ve been discharged.

I’m mended and good to go.

14 weeks after it all started and the team at Sheffield have discharged me. The Sheffield Pathway was the programme I was put on back at the very beginning of all this to give me the best possible chance of recovery.

And it seems to have worked.

It doesn’t feel too soon, it feels right. I’ve got loads of work to do with the physio to get my strength and full mobility back, but in terms of the actual repairs carried out by the team at QMC, their work is done. My next appointment is December 6th 2017.

I know I keep saying how lucky I’ve been, but a few stats make me realise this all the more.

Less than 20% walk again from where I was at.

I’m probably glad I didn’t know those odds beforehand.

But, more than that.

Only 1-2% walk into the meeting with the team at Sheffield 14 weeks later. Most never walk in at all and are left with horrific ongoing problems.

I’ve got pins and needles in my balls, but I can live with that. Even that is likely to wear off over the next six months to a year. I doubt I’ll miss it much though.

Shit, I’ve been lucky.

Coming off drugs

When I left hospital I was taking over 30 tablets a day. In hospital, it was even more. There were painkillers, steroids, anti-inflammatory drugs and others that were being added to the mix, just to counteract the side effects of the above.

I had meetings with the doctors to get them down, but there was so much caution and intertia, it seemed like some could be with me for life.

It was only after another day of wobbly eyesight, anxiety, tears, snotting on the dog, looking at my ever growing appetite and weight that I sat down and read some of the side effects listed for the drugs I was left taking.

And I had a full-house.

Every bloody one of them.

A chance conversation with Ted’s mate Connor the next day who’d been through a similar operation a few years before and he said he’d had exactly the same set of side effects off exactly the same drug. Whilst It was meant to limit the nerve pain and the pins and needles, it was designed to be an anti-epilepsy drug.

I was pretty sure I didn’t need that, so a trip the pharmacist who I trust completely to give good honest advice and he suggested a week long taper to get rid of it. That coincided perfectly with the end of the steroids that were on a (self insigated) three week taper too.

So as of Wednesday last week, I’m completely drug-free.

And I feel erm, shit.

Headache, racing heart, even worse sleep patterns. But my energy is coming back and I’m walking further and further every day.

In fact this week, I got back over an average of 10,000 steps per day. On Saturday, we walked over 8 miles. (pubs were involved)

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So what about the pain?

Well, it’s the same as it was.

No discernible difference, other than the fact I’m no longer full of drugs.

To me, that confirms it was the right decision to take it under my own control.

And also reminds me that if I wasn’t fit and able, with a supportive family and friends around me, would I make this sort of decision?

Would an old person alone at home make the effort to change or just remain zombied and full of drugs they may not need? Even ignoring the financial aspect of this for the NHS, it can’t be good to have that many people taking drugs for evermore that they may no longer need.

Wanna see my scar?

As i’m at the end of this, i’ll show you my scar, which is decent. It’s certainly tidy and is getting more and more tidy by the day. This first one was on the 17th April, so less than a week after the operation.

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And this one was a week or two ago with the healing well under way. IMG_9199

Choosing to be positive

The most consistent comment I’ve had from people throughout this adventure has been how positive I’ve been.

I’m convinced it has helped with every single element of the treatment and the recovery.

The physio was laughing at me this week because of how driven I am being to get back to the best possible version of normal I can.

Years ago I did a short training course called ‘Fish’ It was set in Pikes Peak, Seattle Fish Market and was all about how you can choose your attitude, even in the shittiest of times. I loved it and have kept it as a mantra ever since.

So when all this started, what choice did I have but be super positive?

Well, none really.

I owed it to everyone around me who was fighting with me.

It was this togetherness that drove me on.

I had great treatment and great care by the hospital but the feeling of fighting as a team was maybe even more powerful.

So I’m going to leave you with one final image.

On April 11th, I was very, very scared. I didn’t believe I would walk again, I had no feeling below my waist apart from my napalmed balls and I was in a specialist High Dependency Unit where they weren’t telling me very much about what had happened.

It didn’t look great to be honest.

But when I started this blog in the hope I might help someone else who’s similarly in the shite, I had two images to choose from as the lead image.

This one, drinking tea and smiling.

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Or this one

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Where you can see the fear written all over my face.

Being positive was a 100% conscious decision however scared I was.

It’s a good way of approaching most things in life. So, even if it doesn’t come naturally, give it a try. You’ll be amazed at your own power if you’re positive.

So that’s it.

I’m signing off.

Over and Out.

Thanks for reading.

Learning to forget fear

When all this started only seven weeks ago, I joked with my cousin Cyrus about how hard it would be to learn to walk. After all, kids seemed to find it pretty easy.

This thought has stayed with me throughout and been one of my inner drivers to getting back to mobility.

But I’ve also tried to work out why.

I think the answer is fear.

We aren’t born with fear, we learn it as we get older. The older we get, the more fear we have learned. Yes, we have the inbuilt flight or fight mechanism that is pre-programmed, but we learn all of the rest and it’s what holds us back from really exploring what we are capable of achieving.

It’s why some people fuel themselves with adrenalin and the rest of us don’t. They didn’t learn fear properly and we did.

Kids just fall on their bums over and over during the learning process and because we’ve learnt it’ll probably hurt, we don’t learn in the same way. We step tentatively in fear of pushing too hard.

Over the last few weeks I’ve learned that I am more child than adult as I have just been pushing too hard and had two very distinct burn-outs.

And they hurt.

When I do too much and forget to rest It causes my knees to swell up to such a degree that the pain even cuts through my drug induced sleep. A few nights of one hour sleeps with three-hour gaps between, does take it out of you. Three of them in a row and you begin to feel like rest is a great idea.

But I’m learning.

Slowly.

Rest is part of the recovery.

Growing up in Devon

It’s Devon’s fault.

Through our teens we lived in the village of Ivybridge in Devon, having moved there (initally reluctantly) from my still beloved Oxford.

We were given unbelievable opportunities to take risks. Entire summer days were spent swimming in freezing rivers running straight off Dartmoor, playing with air guns, Black Widow catapults, bikes, motorbikes, scrumping and smoking almost anything. We borrowed boats and went deep sea fishing off Noss Mayo.

Can you imagine how please most parents would be if their kids were stealing apples and eating fruit all day? Modern kids will have pre-cut fruit pieces in a little plastic bag in their chilled lunch boxes.

We didn’t have any choice but to steal apples as we had no money or other food.

The nights saw us out with massive lamps and clubs for chasing rabbits, fireworks, more smoking and even bigger guns. We ate lots of rabbits.

We swam almost every day in a pool called Trinaman’s Basin, trying to find where the infamous character the pool was named after may have drowned. I even taught our dog Lucy to swim there by jumping in with her and getting carried down the waterfall from the pool above.

We had a bloody ball.

It’s a childhood that would strike fear into every modern parent.

On one ridiculous day, we even ran across the Viaduct at Ivybridge. We were near the middle when a train from London to Plymouth came past on the other track.

Ivybridge Viaduct
Ivybridge Viaduct and its 200 ft plus drop and very low sides – designed for trains not school kids

These weren’t just risks, they were crazy. We genuinely didn’t seem to understand fear.

None of these risks would be possible now with social media, cameras everywhere and even joined up policing.

We had no way of getting or keeping in touch, other than going home when we said we would.

But having met up with most of these childhood friends again in the summer after many, many years, I can confirm we’re all okay and all of us seem pretty balanced now.

Sadly we recently lost Andrew Hockaday and he was very much involved in most of the escapades above – it was his mum Hazel who cooked the rabbits!

But I do think this childhood risk taking has allowed me to fear this recovery far less than I could have done. Maybe I wasn’t clever enough to fully understand the consequences of not getting better, or maybe it’s just blind determination that has driven me on.

But I’m pretty sure that I fear far less in my life now than I have done since I was back in Ivybridge.

I’ve said this would be a positive experience overall and in the main it has been and i’m pretty sure the outcome is going tp be okay too.

Taking on the Co-op again

My walking is getting much stronger every day and leg movement is slowly coming back.

The physio at QMC who was brilliant has given me a painful regime and shown me which bits work properly and which don’t.

What I hadn’t realised is that from a seated position, my left leg can’t press down properly and my right leg doesn’t lift up too well, which is still nerve damage and hopefully recoverable.

But it isn’t guaranteed.

The steroids are still in place to help with this, so every picture from now on will show me morphing into Augustus Gloop. I am trying honestly, but I am just eating and eating and it’s not all healthy.

There will be no full-length shots showing my growing tummy in case people ask if I’m pregnant.

I’m not by the way, I’ve had the snip.

So a few days ago, we had run out of essentials (Cava in this case) so I volunteered to do the Co-op run (walk/stumble)

Backpack on and off I set.

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I am not sure I have ever grinned so much in my life. Just being out and free was amazing.

I obviously stopped to look at stupid things I’d seen a thousand times before and cry at their beauty and simplicity.

I’m sure I’m seeing things I hadn’t noticed for years and this is where some of the real positives are coming from.

I hope I keep this child-like wonder for a long time to come.

Down by the river

Another big trip was to sit by the river whilst Holly and Frankie went for a longer walk.

It was bliss.

Boats, birds and greenery and a happy wet dog when Frankie returned.

She then disgraced herself by jumping up on our friend Mel’s lap who had new jeans on (sorry Mel!).

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Wot no testicle talk?

The problem of writing on here so openly about having sore balls and pooing bungalows is that when you bump into people they all know.

They surreptitiously look to see how you’re standing and whether it looks like you’ve just got off a horse (or shat one).

So here goes, I’ll give you an update.

If I sit still for any time at all, I get cramp in my legs. Instant and painful. It’s in weird places too like the top of my thigh. Who gets cramp there?

I still have pins and needles and yes, they are still in my balls, but also right down my legs to the bottom of my feet.

When it’s bad, my skin is painful to touch, like it’s been burned.

Not quite red hot skinned and dipped in battery acid, but very, very uncomfortable and the GabaPentin (drug for nerve pain) ain’t touching the sides.

If I was to describe it now it would be more like Le Chiffre banging away at your little boys with a blunt instrument, whilst you’re tied to a chair.

All day, every day.

Okay, maybe slightly milder than that but it isn’t a nice experience and it’s 24 hours a day and made worse by going to the toilet.

I have taken away lots of drugs (down from 30 per day to seven) so this is a conscious decision to live with more pain than to be more out of it on drugs.

On the day last week when I took out 15 tablets in one go (Naproxen, Codeine, paracetamol and the others to counteract the effects of the codeine) I woke up like I was alive again.

This feeling of being real again is worth a bit more pain and just feeling like I’m alive to what is happening around me.

Latest update from the experts is that it may be nine months to get rid of this ongoing nerve pain, or it may be my new normal.

Oh bollocks, my poor dear bollocks, what have they done to you?

Getting fat on steroids and other stories

Have you had an operation?

Err, yes, I had a sequestered disc fragment removed around four weeks ago.

Oh, okay.

To be honest, I was quite surprised with the question from one of the more senior nursing team members who’d looked after me during my time in hospital. I was more surprised as she was the one who’d spent the most time with her thumb up my rear exit (take note Oscar Wilde), plying me with unwanted but necessary enemas.

This was my how my first meeting started, in the Spinal Outpatients Cauda Equina Clinic.

How’s the bladder?

Oh, it’s fine thanks. Been perfect since I left hospital. Still uncomfortable, maybe even a little painful with the pins and needles but all working just fine.

Oh, okay. Do you need a wee now?

No, I just had one before I came in.

Maybe just a little one?

Well, probably. I have just had a coffee or two.

Can I scan your bladder?

I guess so, if you need to.

Well, I’d like to, just to be sure. How much do you think you have?

Oh, around 250ml, so not much.

Two minutes and one scan later.

You have around 250ml. Now would you just pop to the toilet and get rid of that?

The rescan after my trip to the toilet showed 23ml. A successful visit. Well done.

So we have a few questions.

Okay,

We are waiting on the pathology of the scan?

Oh yes, that’s all fine.

Really?

How do you know that if you didn’t even know I’d had an operation?

I’ll look now shall I?

Look, there it is. All fine. Nothing to worry about.

Can I have a copy of that?

No, it’s not for you.

Really?

No, but you can look at it.

Well, that’ll have to do.

Another question?

Okay.

I am running out of steroids and only have enough for tomorrow. I don’t want to stop taking them without direction from the consultant as it says that on meds sheet I left hospital with.

Oh, your GP should have sorted that with you.

Well, they haven’t because they haven’t been great throughout this, so what should I do?

Chase your GP up for a meds review. They should have been in contact with you over your discharge anyway.

Oh, they haven’t and to be honest I’m not that keen on going back to the same GP after they let me down so completely.

Well, you’ll have to sort that with your new one.

So I’m concerned about my pins and needles, which isn’t easing.

It’ll be okay. Just wait six months or so. Maybe a bit longer, say two years.

And do I get to see a consultant in my next appointment in a few weeks?

No, you can cancel that as I’ve seen you now and that’s just a post-operative catch up like this one.

What about driving, what happens at six weeks. How do I get assessed for driving again?

Oh, you’ll be fine.

Really? I don’t think so. I’d be deadly as my right leg doesn’t work properly and my left is still pretty weak. I can’t move my foot across between pedals.

You just have to practice slowly and brake gently. You’ll be fine.

So that’s it?

Yep, you’re good to go.

Bye.

Getting fat on steroids

After the operation, I was put on a course of steroids. Steroids help with the recovery and muscle growth and are a good thing. They are also highly addictive, play havoc with your taste buds and make you constantly hungry.

They also make you fantasise about food, lick the plate in restaurants and eat all day. From the moment you wake up to the very millisecond before you fall asleep. All you want to do is eat. But weirdly, you want to eat very specific foods.

On the day I got home, I just had to have Fish Tikka from The Shalimar in West Bridgford. 

So the first meal at home was Fish Tikka delivered by The Shalimar. 

It was the nicest thing I’d eaten in months. I’ve never eaten anything that tasted more perfect.

My first trip out after leaving hospital was with Holly for Sunday lunch at Gusto, West Bridgford. I put on big boy jeans and a watch. It was like being an adult again after a month in shorts or pyjamas. We were missing our neice Georgia’s 21st birthday Party in Wirral and that was tough. Sadly, the right thing to do, but tough. So the least I could do was get Holly to take me for lunch.

My starter was garlic mushrooms. creamy, garlicky, mushroomy loveliness. I tried not to lick the plate, but my finger slipped into the last bit of sauce and edged into my mouth. Soon, the plate was completely clean. The main was cod wrapped in parma ham, on a bed of Puy lentils. Again, gorgeous and the plate licked clean surreptitiously. I’m not normally a pudding person, but new steroids, new taste buds and what’s not to like with a hazelnut brownie and pistachio ice cream? The food was so tasty. Shame the coffee was so crap. An Americano without a hint of crema? How do you achieve that? But overall, as a first trip out, it was hugely successful.

I got up to go to the toilet at the end of the meal and asked a staff member if there was a toilet downstairs.

No, sorry it’s just through the doors and up the stairs there.

Okay, no problem, would you like to carry me up them then as that may be a bit of a challenge and I really do need to have a wee quite soon?

Leans forward to look over the bar.

Oh I’m sorry, I didn’t see the stick. Yes, it’s just through the back over there on the right. Sorry. Err, sorry, sorry, sorry. 

The next fascination, no obsession, was Mackerel pate.

I finally got some from Marks and Spencer on an urgent Mackerel foraging trip. Sadly, their efforts just didn’t hit the mark. as I’d seen, read and drooled over a Jamie Oliver recipe on Instagram. So, eventually, I had to make it. And I’m going to eat the entire gigantic Kilner jar of it, all on my own.

That’s 400g of Mackerel, 200g of light cream cheese, black pepper and the juice and zest of a lemon. Jamie Oliver, I salute you.

Lovely, lovely mackerel pate

Messages from friends when you need them

If you ever hear of a friend who is in hospital or in some form of distress, then message them, call them or if you’re not brave enough then write.

Just make contact.

It’s better to be clumsy but kind and maybe get things slightly wrong, than to say nothing at all.

I promise you that saying anything is hugely appreciated. Whatever time of day or night.

The messages I got in hospital were amazing. Literally hundreds of them. From friends, at every stage of my life.

A group of friends from Primary School in Oxford. Just so thoughtful and appreciated. Friends who I’d finally caught up with in the summer from my time in my teens down in Devon. Those I met up with again when I moved back to Oxford and then University friends. And it even prompted some of them to get together themselves after 25 years.

Messages from Nottingham Trent Uni students who I spoke to a few weeks before and work colleagues from everywhere and every time throughout my life.

Messages from friends and family who’d been through the mill themselves and had much tougher times than I’ll ever know, making the effort to write really thoughtful, inspiring, kind messages at three in the morning give you the power to keep going, to drive yourself forward and to get up and go again.

Messages coming in on Whatsapp, Facebook, this blog, Messenger and by text. Literally, every channel online filled with kindness.

There was just so much good will and thoughtfulness coming at me from every angle that I had to get better so I didn’t let people down.

Hopefully, I replied to every one of you. I don’t remember receiving all of them in my early drugged state, but I can tell you how much it meant to receive them and I will forever be grateful to all of you for picking me up and throwing me into my recovery. And then standing by me through every step I’ve made since.

So if you do have a friend in need, please do say something.

Saying something is always better than saying nothing and it’s always appreciated.

Rest and recuperation in Anglesey

My recurring dream in hospital was being by the sea in Wales, breathing the beautiful clean air and resting, between walks along the front to get ice cream. At this point, for every hour of activity, I need about the same again in sleep during the day.

And then our gorgeous friends the Kimpton’s jumped forward and offered us their beautiful house in Cemaes Bay in Anglesey. genuinely one of my favourite places in the whole world. It has so many happy, family memories of times there, that I couldn’t imagine anywhere in the world I’d rather be.

The drive could have been a challenge. Poor Holly is getting lumped with all of the grunt work I’d usually do. All of the shopping loaded, packing the car and then driving, while I sat as a passenger chatting to friends and surfing the social media.

A few stops. Snugbury’s for Ice cream. and then after an overnight in Wirral and we arrived in Cemaes.

Starving.

So we parked the car at the top of the village and walked down to get some food to eat on the harbour wall. Fish and chips for Holly and a pie and chips for me. The struggle as to which type of curry sauce to add (Chip shop or Chinese) and a waddle to the harbour.

Simple food has never tasted so good.

On a bench, by the sea with the wind in your face (not my hair obviously), in a place you love, with your wife who’s been so incredibly strong over the weeks we’ve faced together and Frankie, the ever-present support, by my side, day and night.

by the sea at Cemaes bay

When we’d finished our lunch, Holly walked back up to get the car and I walked towards the house at the far end of the bay. It was only a short walk, but when I came around the corner and saw the whole bay and the house at the far end.

I stopped and cried. (again)

I’d never been happier to be alive and to just be somewhere I wanted to be.

Honestly, the only place I wanted to be.

I think I was just glad to be.

Striving for normal

Since I left hospital, I have been striving for normal. I just want to do things again that normal people do, or what we did before. On the way back from our Sunday lunch at Gusto, I was desperate to just call into the Co-op again to walk around and browse a few items.

I only bought some fresh bread, but when I got home and was sitting in the kitchen with the bread slathered in butter, it tasted amazing.

But it’s the little things I’m missing. The total dependency on others to do almost anything or get anywhere.

It’s a good few weeks on from the operation now and I’m safe enough in a shower, but the first few weeks were scary and very public affairs. Showers together are meant to be fun aren’t they?

They aren’t when the together means you have a minder, just checking you’re not falling over. So, getting that little bit of privacy back felt like another step towards normal.

When you can’t drive, you can’t just pop to the shops, I’m not safe enough to get on a bus on my own yet to just nip into town for a coffee with Ruby at work and I can’t even walk as far as the pub for lunch (yet).

So my striving for normal is a real drive. It’s almost more important than anything else I’m facing.

I have no intention of applying for a Blue badge. Even if I do end up with a disability, I’ll still park at the back of a supermarket car park and walk, rather than abuse my position and scramble for the places at the front.

When you lose normal, you realise how much normal means and how wonderful normal feels. I understand that everyone’s normal is different, but normal is great.

It’s just sort of normal.

I want normal back.

Mental health and hospital

Perhaps the biggest surprise to me is the mental health aspect of what I’ve been through.

No strike that.

What we’ve been through.

Within a month, we’ve gone through total and real fear of zero mobility. before this, the dread of hearing the words ‘Spinal Tumour’ by a still unnamed doctor.

When it all started and my legs gave way, my very first thought was that I had a brain tumour. I understand mechanics quite well and when my legs gave way, it was very clearly not a mechanical fault.

My own lovely Dad started dropping things and tripping up too regularly before it was discovered that he had a brain tumour. From quite early on, it was clear it was an electrical fault wih him and the question of whether it could be hereditary was never completely answered by the same GP over ten years before, who ignored this issue. It’s always sat there bubbling in the back of my mind.

But today the new normal kicked in and it was another teary, scary affair.

Holly went back to work.

Alarm going off at 06.30, making the coffee, getting up and getting ready before having breakfast together. Ham and eggs. Lovely.

All things we did before, but haven’t done since.

And then it got to 08.20 and Holly left.

I sat in the conservatory and cried and cried and cried. Fat, snotty tears dripping off my cheeks and landing on Frankie.

I’m not sure why really. I guess it’s because I was on my own for the first time in a month or more.

Luckily my mobile went off and it was my sister Sarah.

Perfect timing.

She dragged me back to where I neeed to be and 45 minutes rabbiting on the phone was exactly what I needed.

But where would you turn to if you didn’t have this incredible level of support that I’m lucky enough to have?

There’s nothing from the hospital. Nothing yet from the new GP (who seems to be brilliant) and without the family support, you’d be completely alone.

I don’t even have any suggestions about how to improve this but some contact and support would help.

You do feel incredibly isolated, however strong you think you are.

Later the same day

I got the call from the Spinal Injuries unit in Sheffield who are overseeing my care.

Unbelievable.

For all the ridiculousness of my meeting with the clinic in Nottingham this was the exact opposite.

Reassurance personified.

After a 15 minute conversation I now have a much clearer and realistic picture of my rehab. It wasn’t all good news and some things will take much longer to recover than I hoped. But I know now and can get used to dealing with it.

I’ve also been told very clearly that I’m doing too much, ignoring what my body has been telling me and pushing too hard to get back to my normal.

So it’s more rest, slow down and allow myself to recover.

And the pins and needles.

Get used to them.

They may be with you a while. Maybe forever. 

Bollocks.

But hey. If that’s what the new normal looks like, I’ll take that. 

Coming out to Contrasts

The walk away from the team in the D8 ward was emotional and frightening. It was only the length of a corridor to the lift and then down to the exit. I’d been walking the same distance for the last few days, over and over. I was gaining confidence with each step and there was no way I was leaving in a wheelchair. I needed to prove to myself and the team who’d given be back so much, how far we had come together.

Who’s scared of lifts?

Well, never me before, but it was a new, unpleasant, nervy, sweaty experience. Reaching the ground floor and the stop felt like gravity had been turned up to maximum to make it more difficult.

And then it was just the short walk down the slope past the MRI unit and I was facing the outside world.

Outside.

And the world had been turned up, with all the subtlety of a three button TV from the seventies.

It was like being six again. 1972, at home in Oxford and lucky enough to have a colour TV. The priests from the Catholic Church across the road were with us to watch the Leeds Vs Arsenal FA Cup final and one of them was an Arsenal fan. With sisters Rachel and Sarah, we were allowed to drink an extra weak version of shandy from our Pewter Christening mugs, but secretly hating every sour mouthful.

Leeds scored and the priest said “The Bloody Arsenal”

Time stood still.

A priest had sworn.

In front of me.

Over a football match.

In that moment, the world that in those days only had three buttons, got turned up.

Colour, contrast and volume.

And it was the same walking through the doors to the outside world, weeks ahead of every schedule the consultants had discussed as possible.

The world had been turned up.

The noise was deafening. Cars sounded louder, birds tweeted more cleanly and I’d discovered a new level of surround sound I didn’t even notice before.

The colours just looked brighter. Unnaturally bright. I’d been looking through tinted hospital windows for two weeks, but still the colours were bigger, bolder and brighter than I’d ever seen, or maybe ever noticed before.

And the contrast. Every edge was sharper, every outline more defined and every object moving across the other with unbelievable clarity.

But it was also clear that every one of the steps back to the car was not going to be as easy as those flat, smooth practice steps on the ward.

With each step, I realised I was getting no feedback. Nothing coming through my hips and no idea of my foot position without looking down. I was walking, but it was a different walking. More based on throwing a leg forward and hoping the other would follow than walking as Toud know it. A 300 metre walk that previously would have been a minor annoyance was a genuine challenge to overcome.

I grinned and cried and sweated my way back to the car a very happy man and poured myself backwards into the passenger seat.

Home and the British Red Cross

Coming home after a period in hospital, is only possible if you’re going back to a place that is safe. It seems to be the biggest potential backlog in the whole system. I’d had a sensible discussion with an Occupational Therapist in the hospital and we’d agreed what was needed at home.

  • A chair I could get in and out of easily
  • An extra support cushion to help with the pins and needles
  • Frame around the toilet
  • Handles for inside the shower
  • Shower stool

The rest would be okay.

The first three were easy. The British Red Cross can loan you those and delivery had been arranged for that morning with just 12 hours notice.

Amazing. A service I didn’t know they offered that allowed me and others like me to get home and stay there.

The shower handles are another matter altogether.

Six weeks for an OT visit to home to even assess suitability. How can that make sense?

We are lucky that we are able to just order these things for next day delivery on Amazon and then have a lovely brother-in-law who will pop in, test them and fit them. But for an old person coming home to an empty house with no support, if they were half as scared as me, but critically, without the incredible level of support I have received, it would be terrifying.

It’s not surprising that many come back in again after further accidents or incidents. It’s not the fault of the OT team who are doing everything they can, but it just has to become more joined up to work better for everyone involved. The teams in hospital work so hard to get people back to health and then it’s the contrast again of the real world and all its delays taking over.

It’s the same with the Physio. My operation and time in hospital must have cost a fortune. Who knows £50K plus? Yet, I leave with a pamphlet about my physio and the next appointment three weeks ahead. There’s a risk of undermining all the hard work and expense for a few extra £’s of resource at the right time.

Facing my Nemesis

Before I was allowed to leave hospital, there was still the small matter of the MRI scan that was still outstanding. It had been delayed and delayed, mainly because of my own fear of going in again without a general anesthetic. The threat of being kept in longer, just to wait for the scan, did win through in the end and I agreed to go in anyway.

Even with a 06.00 start, there’s a lot to get done before a 10.00 scan and the morning was a flurry of toast (lovely toast), tablets, monitoring and uncomfortable toileting. (a bungalow leaves some marks on the way out you know).

And then it was upon me. As much as I tried to walk, they made me go down in the bed. I don’t think this helped much, but the porters were great, chatty fellas and definitely eased any tension.

The Porter blocking the gates to hell

The question for the last few days, months and even years was whether I was unable to cope with an MRI because I was too fat and claustrophobic or whether it was genuinely through pain that I struggled to cope.

I’m not sure any of the consultants or MRI operatives previously had ever believed me how painful I found it. But I knew that the pain of an MRI was nothing to do with being in my head and everything to do with what was going on in my spine (and obviously had been for the last three years or more).

Facing the MRI machine

And then it was on. I was loaded into the machine and waited for the pain to land.

Nothing.

No pain at all.

I have to say life inside an MRI machine is much easier when you have someone talking you through the cycles. it breaks it down into four minutes segments, rather than one huge 50 plus minute nightmare of pain, doubt and disorientation. When you’re alone inside a machine with no communication for over an hour, you start to wonder whether they are still even out there. It’s not a nice feeling at all.

If you’ve never had an MRI scan, imagine being inside the world’s snuggest fitting and loudest microwave, being bombarded with magnetic waves and slowly being brought to a light simmer through the defrost programme. It slowly heats you through to the core and for me previously, had just become more and more painful as time ticked by. A full spinal scan can easily take over an hour and no sedative or even Oramorph (morphine) had been able cover the pain I’d previously endured.

But the consultants had staked their professional reputation on this not hurting. To quote them “If this hurts, then we’ve not done our job properly” and they had been right with everything else so far, so I was happy to believe them.

And as proof it was different this time, it was the first time in my slightly sedated state I’d ever heard the patterns before. Each cycle plays a different beat and to each beat you can overlay patterns and with the patterns, there are words too.

The first pattern was an obvious one

Bad back, bad back. Bad back, bad back. Over and over again.

Then came Holly, Holly, Holly.

And finally, downtime, downtime, downtime.

And then it was over. Almost as soon as it started. It was done. I’d beaten the MRI machine for the first time in three years. Zero pain and to be honest, zero actual discomfort.

For the first time, I was starting to believe that life after this could even be better than before, even with a little bit less mobility as I was pain-free. Maybe for the first time since my teens.

If you’ve lived with low-level grinding pain for a long time, you can imagine what a feeling of hope and optimism this offers.

Life was still going to be different, but life was going to be good, in whatever format it existed.

Catheter Time (Not like Hammer Time in any way)

Have you ever had a catheter in for a period of time? No me either. 

I wouldn’t recommend it. It’s one of the most unnatural feeling things you could ever imagine. It was put in before the operation and still in place all those days later. To get home, it had to be gone too. To just lie there and not be aware of the fact you’ve filled a bag hanging below your bed with wee is one of the clearest signals that you are not in control. Your body isn’t doing as it’s meant to and you’re not even involved in the most basic of decisions – drainage.

So I was pretty clear in my head I wanted it gone as soon as possible. But even removing it, became a week long process of retraining my bladder to fill up, teach myself again to know when it was filling up and emptying it regularly enough to not cause damage to your kidneys through backing up the system.

Since the day after the op, I’d been in this training mode and using what’s called a Flip-Flo Valve where you control your own drainage rather than aimlessly allowing your body to empty itself into a bag below the bed. It’s basically a tap on the end of the tube that you empty every 1 hour, two hours or four hours, depending on where you are in the training programme. When it’s not in use, the tap is literally strapped to your leg as a reminder of your own lack of control. 

Seven days on, training completed and it’s time for the removal. 

If you’ve ever swept a patio or decking when it’s wet and you’re pushing water ahead of you with an uncomfortably wide brush. It’s a bit like that, but coming from deep inside your body. Almost like someone pulling an umbrella out of your nasties when you know there’s a rush of water ahead of it. It feels like you’re uncontrollably wetting yourself, when you know you’re not. It’s over in moments and the relief of it being gone is without doubt worth the discomfort of the removal process.

Life after a catheter is a much simpler but initially quite nervy affair. I don’t remember wetting myself since the Vodka incident at university and I didn’t want to start now. It’s like a game of chicken with your bladder.

How long do I dare hold on before I go?

Man nappies were on hand, but remembering what a full bladder actually feels like when you only have partial feeling right across your middle is another new skill to learn.

Two cups of tea later and I was ready for the first test.

To ensure everything is working okay, you have to have a bladder scan first and mine measured 750ml. A decent pint and a bit.

I was good to go, so I staggered to the toilet and confidently closed the door behind me. Even this felt good, having been craned out of a toilet two weeks before when I fell off and almost into the corridor only a few weeks before. When you look back at low points in your life, this was undoubtedly one of them. But now it was different. I was standing and I knew I needed to go.

A glorious, rushing wee. Never before have I enjoyed going to the toilet standing up more.

It didn’t feel like the couth thing to do to see how high up the wall I could get it, but it was still a slow, luxurious, effortless wee that I could actually feel and more importantly for me, control.

Looking down at the still un-flushable toilet and I was now confident that I was going to be leaving hospital with bladder and bowel control. In only two weeks, I’d gone from toilet zombie with nothing under my control, to the complete belief it was all going to work again.

As happy moments in your life go, this was there. To regain such a simple bodily function meant that whatever still happens with my legs, I wouldn’t be living that worst possible picture I’d dangerously painted in the back of my mind and prayed would never come true.

You’re a lucky boy

 The final hurdle was the drug pack from the pharmacist to gather, which came far quicker than expected and then a final chat with the consultant.

He explained how, on the night of the operation – which was a Sunday remember, all of the spinal team had met and planned the route in to remove what they’d seen in the scans. It was complicated and difficult to get at as it was so far back and so close to the spinal cord and nerve bundles that feed from it. Time was of the essence too as potentially irreparable damage was being done. They agreed their strategy and even in their words, called it just right.

There are still no pathology results from whatever was removed, but that doesn’t hold any fear for any of us. In my gut, I know it’s not cancerous and even if it was, that would be a simpler hurdle to overcome than has been beaten already, so it’s just a wait and see and keep believing things will work out okay.

The discharge notes say it was a sequestered disc fragment. A lump of bone that had broken off my spine and was floating around bumping into things it shouldn’t be. It was so covered in scar tissue that it was harder to identify and may still yet be something else.

This officially means I’m as hard as nails, as I have been walking around with a broken back for an unknown length of time, even skiing five weeks previously and seeing Oxford United at Wembley the weekend before.

As the consultant got up to leave, I stood up from my chair and thanked him.

I said I’ve been a lucky boy here haven’t I?

Yes, he said.

Very.

Home

Home, safe and happy.

I’m home, safe and happy. I have had the most amazing care any person could possibly have.

I’ve been lucky. Very lucky. 

More soon about what’s been happening over the last few days, but here are a few images. 


In escape mode. 


And Frankie seems to have forgotten me. 


​And my small pack of drugs.